Dealing with gawkers (having a special needs child)

When you have a special needs child, you’ll always get stared at and rude comments, and it’s not always the easiest thing to deal with. After finally getting Aliceana home (on oxygen) we went on our first outing as a family the next morning to the local Farmer’s Market. We had only gotten to the first couple booths before a little boy started asking his mom about the oxygen and how he thought it looked stupid. I wasn’t ready for that at all, I was so furious as I tried to hold back the tears. A million thoughts rushed through me, thinking about how we don’t know how long she’ll be on oxygen and she will most likely be on it long enough to be able to understand that people are pointing out that she’s different.

My mom helped me feel better though, when I told her about the Farmer’s Market incident she explained that when my older sister was little she pointed out and started asking about a man who only had one leg who was at the Post Office. She said she was so mortified and had apologized to the guy right away. He told her that it was fine, children are just curious, and he would rather that people ask questions than just gawk at him. I don’t know if it’s what that man said, or the fact that my mom still remembers that day so vividly and she feels pretty bad about the situation, but it made me feel better about the reaction from the little boy at the Farmer’s Market. To this day that was probably the worst encounter I’ve had with somebody, it didn’t help that it was the first time going out in public with her. I was definitely afraid to take her anywhere else for a while after that.

I’ve gotten used to the comments though, it’s gotten to the point where I don’t mind if people ask. Most people are smart enough not to comment on it, some will comment on how cute she is, ask her age, name and other things then casually bring it up in conversation. The only time it irks me is when people walk up and start the conversation by saying “What’s wrong with her?” I would love to answer back with “Can I ask what’s wrong with you?” I find it’s easier just to quickly answer with, “She has a rare lung disease, but she’ll grow out of it.” Then they’ll try to tell me about every sick kid they’ve ever known, because apparently it’s the same thing.

Last weekend we ran into something completely new though, we were on our way to be seated at Olive Garden when an elderly lady stopped my husband who was holding the infant carrier with Aliceana. Well, this lady stops and says how cute she is, then asks why she has the oxygen. At this point I followed the hostess to the table by myself knowing my husband would catch up after going through the usual explanation. When he got to the table he looked completely dumbfounded.  Apparently this woman touched Aliceana’s leg, the first red flag especially since stranger’s touching her is something we have to avoid since her immune system isn’t good and a simple cold could put her back in the hospital. Then she says “I’m healing your lungs in the name of Jesus.” Then she told my husband that Aliceana’s lungs were now completely healed. Yeah, I’m pretty sure that’s not the case lady! Later on my mom jokingly told me I should have gotten her name, lots of people would pay for someone to “heal” their child.

For me it’s gotten to be almost second nature, I’m so used to her oxygen that it’s just another step in my role as a parent. Dealing with all of the gawkers can be pretty annoying, but something you have to learn to deal with when your baby has special needs.